MS: Busting the Myths
MS Brain Health is calling for a radical change in the management of multiple sclerosis because time matters at every stage of the disease.
The MS Brain Health initiative has emerged from an evidence-based international consensus report, Brain health: time matters in multiple sclerosis, which recommends a strategy to maximize lifelong ‘brain health’.
In 2017 MSNZ officially endorsed the report and have used the principles to direct and provide international support for our advocacy work into improving the access to treatments and services for people with MS in New Zealand. To read more about our recent work visit our Advocacy page.
Brain health: time matters in multiple sclerosis presents consensus recommendations on diagnosis, therapeutic strategies and improving access to treatment in MS. Its core recommendation is that the goal of treating MS should be to preserve tissue in the central nervous system and maximize lifelong brain health by reducing disease activity. The report calls for major policy changes aimed at achieving the best possible outcomes for people with MS and those who care for them.
Brain health: time matters in multiple sclerosis was developed by an international multidisciplinary group of experts under the chairmanship of Professor Gavin Giovannoni and has been endorsed by a number of professional associations and advocacy groups.
View the report on the Brain Health website here
Time Matters in MS – Executive Summary
Multiple sclerosis (MS) is an incurable chronic disease in which the body’s own immune system destroys tissue in the brain and spinal cord. It is the leading cause of non-traumatic disability among young and middle-aged adults in many developed countries, and it affects 2.3 million people worldwide.a Although there is no cure for MS, therapies exist that can alter the disease course by reducing disease activity and slowing down the accumulation of disability. This report recommends specific actions that aim to achieve the best possible outcome for every person with MS.
A therapeutic strategy that offers the best chance of preserving brain and spinal cord tissue early in the disease course needs to be widely accepted – and urgently adopted. Even in the early stages of MS, cognition, emotional well-being, quality of life, day-to-day activities and ability to work can be markedly affected by the damage occurring in the brain and spinal cord. As the disease progresses, increasing disability – such as difficulties in walking – imposes a heavy burden on people with MS and on their families. It also leads to substantial economic losses for society, owing to diminished working capacity.
Significant delays often occur before a person with symptoms suggestive of MS sees a neurologist for diagnosis and treatment. This is despite diagnosis being 10 times more rapid now than in the 1980sb and substantial evidence that early treatment is more effective than later treatment. Campaigns to raise awareness of MS among the general public and among clinicians who make referrals are urgently needed, as they have the potential to improve outcomes by enabling earlier diagnosis. Initiatives to improve access to specialist MS healthcare professionals and specialized diagnostic procedures are also needed.
Early intervention is vital. Appropriate lifestyle interventions, treatment with a therapy that can reduce disease activity and consideration of rapid switching to another therapy if monitoring reveals a suboptimal response are crucial elements of the strategy. Involving people with MS proactively in decision-making and in managing their disease is also key to the successful management of MS. Healthcare professionals should encourage those in their care to play a fully informed, shared role in treatment decisions and to live a ‘brain-healthy’ lifestyle.
Regular monitoring of disease activity and recording this information formally are the cornerstone of the strategy recommended by the authors. The results of clinical examinations and brain scans will enable personalized treatment for every person with MS and will generate long-term real-world evidence that can be used by regulatory bodies, health technology assessors, payers and clinicians for evaluating therapeutic strategies.
Offering the full range of therapies that can reduce disease activity improves the chance of finding the best option for each person with MS. The number of effective therapies continues to grow, providing increasing scope to tailor treatment to individual needs. In many jurisdictions, however, access to therapies is limited by licensing stipulations, prescribing guidelines or reimbursement decisions; these typically lag behind the most recent clinical trial data and real-world evidence. We therefore call on regulatory bodies, healthcare authorities, insurance companies, health technology assessors and payers to improve access to therapies, so that personalized treatment can be optimized. We also recommend that the relevant bodies consider all costs to all parties when conducting economic evaluations and that they encourage the continuing investigation, development and use of cost-effective therapeutic strategies and alternative financing models.
Major public policy changes are needed in order to translate recent advances in the diagnosis and treatment of MS into improved outcomes. Enabling and promoting widespread adoption of the therapeutic strategy for MS recommended in this report has the potential to minimize disease activity and maximize lifelong brain health for those with the disease. It is time to make a real difference to the lives of people with MS and their families – and to avoid many of the long-term economic and personal costs that result from unnecessary irreversible disability.
Download the consensus standards here
MS Brain Health has also developed a resource for nursing professionals. It explains how nurses can put into practice the recommendations from the report Brain health: time matters in multiple sclerosis to benefit their patients.
Download the guide for GPs and primary care providers here